My name is Shona, I'm 20 years old, I live in the UK and I have a rare genetic condition called Marfan Syndrome. Marfan is a connective tissue disorder that can affect the whole body, everything from the heart to your skeleton, the severity varies within people and unfortunately I sit on the more severe end. I've had 3 major surgeries including spinal fusion and a hip replacement just in the last 4 years and I face having more spinal, hip and major open heart surgeries in the years to come.
I use a powerchair to get around for many reasons but the biggest being that there is a large cyst sitting at the bottom of my spine, eroding away bone and causing me a significant amount of chronic pain. Walking even a few metres is incredibly painful and I'm unable to propel a manual wheelchair so using a powerchair is the best way for me to get around and it's allowed me to continue enjoying life.
I've only been using my current powerchair for just over a year but my health has declined so severely and so quickly that it is already unsuitable, it's been unsuitable for over 6 months. My current chair is causing me pain and is limiting me greatly so it has become necessary to upgrade. I now need something that has tilt and recline functions, since the only thing that relieves my pain is laying down. When I'm sat up after just 30 minutes my pain can often be so severe that it leaves me in tears, making my trips out the house often short so having these functions would allow me to spend more time with family and friends. I also suffer with chronic joint pain and joint dislocations so I need a powerchair that is as comfortable as possible, something with good suspension so I don't feel every bump in the ground.
Unfortunately NHS wheelchair services won't help me due to the fact that I'm able to walk a few metres inside my home on crutches, but they also do not have a powerchair that is both suitable for me and will comfortably fit both inside my home, which has a verge narrow front door.
A new powerchair would mean that I could spend more time with my family, I miss out on spending time with them and my 1 year nephew in particular. I often struggle to even sit up and eat a meal with them.
For so long I've been using an unsuitable powerchair and the idea of having something that fits me, that is ideal for me, makes me so emotional as I think of all the things I'll be able to do and achieve. I often feel cut off from society, stuck inside my home laying down all day to try and control my pain but finally freedom feels like it's just an arm's reach away and I would be so grateful to anyone that can help me get back some of my life again.
The powerchair I'm looking to get is the Quantum Q6 Edge 2,0. The goal includes covering the fees that GoFundMe take from donations. Sadly I don't have any savings and I'm unable to work so this isn't something I can fund myself. I also cannot use my PIP high rate mobility as I'm hoping to learn to drive next year so I'll need to use that to get a wheelchair accessible vehicle on the motability scheme, something that would also give me heaps of independence as I currently rely on unreliable and often inaccessible public transport.